quote: I'm wondering what separates autism from something like, say, schizophrenia.
About 15-20 years. Autism sets in prior to age 3 and schizophrenia happens after adolescence, often in the late teens or early twenties. One is a person who is born with a condition that effects his development from nearly birth, namely autism. It effects how you talk, walk, learn, interact with people, etc. Schizophrenia is taking a "normal" or "typical" person who grew up without the effects of mental illness or disability and then hitting them with a whammy that COMPLETELY changes who they were to some new person.
Schizophernia also has pretty rigid diagnostic criteria where as the disorder called autism has gobs of different criteria.
An example would be Ray Charles, may he rest in peace. Ray was born seeing and lost his sight at age 7, I believe. He saw. He knows what vision is, knows the abstract thing called "Color" (which cannot be described without "seeing it"), etc. Hellen Keller, however, was born blind and never knew color, light, dark, etc. She grew up that way and it effected her development from the moment she was born. Ray, on the other hand, had to adapt when he lost his sight. Change who he was and how he perceived things. With autism, they don't "know" how to see things or react to things any different than how they always have. With schizophrenia, they knew and lived times where they didn't hear voices or were paranoid about someone out to get them.
Does this make any sense? I ain't a doctor or a clinician, just giving some differences that I can see.
posted
Helen Keller was most certainly not born blind. She was old enough (19 months) that she had started talking (baby words, like "wah-wah" mostly) before the near-fatal bout of scarlet fever that stole her sight and hearing.
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posted
D'oh! My apologies for bad history. I had always assumed she was blind since birth. But my bigger point (bad example aside) still stands. Autism, which occurs at the beginning of the development cycle is very different than schizophrenia, which occurs later (in some cases, much later) in a person's developmental cycle.
quote:More to the point, though, is that generally nasty things like punitive shock treatment most likely happens in a vacuum, not out in the sunny open world. Meaning, a person with a strong circle of support...parents, siblings, relatives, friends, teachers, etc. won't sit idly by while such things were being used. More at risk would be those folks who lost their parents, grew up in an institutional setting, and have only other "professionals" around the table making decisions on what treatment is needed.
fil,
for the facilities in Massachusetts and Rhode Island, it's mostly NOT wards of the state that get placed there. The placement is done by families who are fiercely devoted to the decsions that they've made - the decisions to place their child out of home (even out of state in some cases) and to subject them to what we would describe as torture if it was anyone else getting treated this way.
A few years ago, Massachusetts got into trouble for trying to shut down the "behavioral programs" - they were sued and lost. (evidently judges think "torture" is something that is a term we should only apply to nondisabled people)
The state was also forced to start placing people in these facilities - if they were wards of the state needing placement or the family had no preference.
It's not under the carpet at all.
But even outside of these facilities, many behavioral programs run on a "compliance" model - where the program consists of "compliance drills." Unfortunately, I've actually had some peronal experience with some of this - as being the one insisting on compliance and administering "aversives."
quote:Victimization of 19-year old Linda Cornelison called "inhumane beyond all reason"
The following report is excerpted from recent bulletins of the Coalition for the Legal Rights of People with Disabilities (also reported in The Boston Herald, Feb. 15 and 23, 1995, and by AUTCOM)
The Disabled Person's Protection Commission (DPPC) and the Massachusetts Department of Mental Retardation (DMR) released the report of an extensive investigation into the death of a 19-year old woman who died in 1990 at the Judge Rotenberg Center (JRC, Formerly the Behavior Research Institute, or BRI). The investigation, which included interviews of 72 witnesses, review of hundreds of documents, and reports by four experts, concluded that JRC/BRI direct care staff, nursing staff, and administration, as well as several specific staff members, took actions that were "egregious" and "inhumane beyond all reason" and constituted not only violations of legal standards but violations of "universal standards of human decency." Abuse and violations of DMR regulations were also found in the woman's treatment by JRC/BRI prior to her death.
The Judge Rotenberg Center has been the source of controversy for years because of its heavy use of "aversives," which involve physically punishing people with mental retardation or autism to influence their behavior.
The woman, who was mentally retarded and could not speak, began showing signs and symptoms of illness on December 15 and 16,1990: she refused her food (she had always had a hearty appetite), she was restless and fidgety and made unusual noises. By December 17, she was pale, disoriented, had "glassy eyes," and kept attempting unsuccessfully to vomit. During this time, because staff mistook her attempts to communicate her pain and discomfort for "target behaviors," she was punished repeatedly -- forced to smell ammonia, spanked, pinched, and forced to eat "taste aversives" -- either a vinegar mix, or jalapeno peppers or hot sauce.
She received a total of 61 aversives on the day that she died.
Some more toward the end here:
quote:The program allowed the 19-year old to be limited to as few as 300 calories a day, 20% of her minimum calorie intake for the day. A dietary expert consulted by the investigator stated that it was impossible to maintain the woman's health on 300 calories a day, and that she needed at least 1737 calories a day to maintain her lowest acceptable weight, 108 pounds. Although JRC/BRI was under a court order to ensure that her weight did not slip below 90% of ideal body weight, the autopsy report showed that the woman, who had weighed 125 pounds when she was put on the food program less than a year before her death, weighed 90 pounds. In less than a year, she had lost 35 pounds, 28% of her body weight.
The program allowed the 19-year old to be limited to as few as 300 calories a day. She was deprived of food for merely having the wrong answer on the computer.
In addition, although DMR regulations permit the use of intrusive and severe aversives such as spanking and ammonia for "seriously dangerous behaviors," the woman was punished when she displayed the following behaviors: "Drooling, spitting, nagging, stopping work, refusing, silly laughing. She was deprived of food for merely having the wrong answer on the computer."
posted
I still say there's got to be a way to shut these places down. Maybe it'll be a long-term project.
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posted
Silly laughing? What the hell is wrong with silly laughing? It's got to stop. It just has to. Making people smell ammonia. What good does that do? That's horrible! It's got to stop. Parents trust these people because they are "experts". It's just like those Spock types in the 50s where peopla had all sorts of mixed up advice about child reering. Pick up the child a lot. Don't pick up the child a lot. Put the kid on the schedule. Do experts REALLY know what they are talking about? If a parent is having trouble with their autistic child misbehaving, yelling, throwing tandrums and hitting themselves they are going to trust some expert who will say, I know how to handle your child. I know what to do. They won't question sitting a child down and forcing them to do something tedious and stupid, nor will they question restraints. Parents need to get educated and so does the rest of society so that this stops happening.
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posted
Note to self: Stay the hell out of Massachusetts. This is really difficult stuff. Ohio had these types of places and while I know abuse still happens, it isn't institutional any more (not since the 70's when the larger ones were shut down). I am so surprised that there are places that are run this badly at such a huge level.
posted
I am sure there is tons being done. It just takes finding one of those many organizations and hitching on for the ride to help out.
I would start with THIS website. "Arc" groups come from an old titled organizations called "Association for Retarded Citizens." Pretty old-school name but the initials "ARC" were always joined with "Advocacy" so they just simplified it to "Arc" and don't use it as an acronym any more. Check it out. Usually one of the better clearing houses for information on helping out in the state on these types of goings on.
I would love to know who you hook up with or what organization you link up with in this process.
posted
Wow, talk about kismet or synchronicity or what. This topic has been good for me as it allows me to talk about things I don't get to do, even though I work to support people with disabilities daily. We work in places with abuse, neglect, poorly run programs, etc., etc. But for the most part, we worry more about folks having enough to eat, to pay their bills, to have fun, to get a job, etc. Thankfully, the kind of stuff that most everyone worries about.
Anyway, I was talking with a co-worker who has been stumped trying to help find a place for a recently adultified 18 year old. Another thread can deal with this issue, as it is a problem with kids with and without disabilities, but my co-worker's person just turned 18. He was in custody of the local Child Protection Agency because he was removed from his home due to abuse/neglect by his birth mother. He was never able to return. At 18, though, regardless of the child is "ready" they are adults and CPA is finished and wipes their hands of this person and moves on.
Which leaves some folks in a pickle.
Anyway, that is another discussion. The short version is this young man is diagnosed with autism and has displayed over the years very destructive physical aggression towards self and others. The current place he is living (out of state from us) is great, but they only serve folks up to 18 and now he has to go. And in the continental 48, not a single facility has an opening or is willing to work with supporting him.
Except for one: Judge Rotenberg Center in Mass.
Oh my. So I kind of freaked my co-worker out by talking about what went on there. Granted, the death there was nearly 15 years ago, but still.
I checked their website and apparently the doctor that started the program is still involved (as of a writing in 2002). Dr. Michael Israel is a student of BF Skinner, a popular name in our Psych. 101 classes in college. He opened some facilities in Rhode Island and Mass. and has been unpopular ever since because of his belief that strong aversives can be an effective way for people with severe behavior issues to get under some control.
He still advocates for shock treatment by remote control.
Now here is the thing, though...I still stand by my claim that this is VERY much the exception, not nearly the rule. Israel is seen by many (if the brief bit of Googling was accurate) as anachronistic and very "old school" and abusive. Yet the school also does things that other places refuse to do. The school uses little or no psychotropic medications (which, in the case of autism, is merely chemical restraints), little or no physical restraints and lots of positive reinforcement programming. Still, I have a hard time with electric shock, though.
But not to be misinformed, I did order from their center a video that they send for free that shows before and after treatment movies of students who have been in their program. if it is interesting, I will let folks know.
Anyway, thanks for the posting as it is oddly immediate to me now and not merely a discussion. My co-worker will be happy to be armed with new information to better support this individual.
Some sites of interest I found from the company itself:
posted
I love the way they understate everything. Is there a way to find out why they shock these clients at their place? For what reason? I'm sure they'll try to say it's for their own good, but something seems wrong to me. Shocking people. Inflicting pain on them for the smallest infraction. It seems wrong to me... Wrong and abusive. Even if they don't use drugs and restraints (which a person i met at a meeting said was not the case) The fact that they are shocking people seems... to me like a victorian asylum updated for the 2000s with technology instead of lobotomies... It's still seems wrong, regardless of the results.
*Can't get over the cute, old music they play on the JRC site*
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quote: *Can't get over the cute, old music they play on the JRC site*
Yah, that was definitely creepy.
As for drugs and folks with autism, I really haven't seen any drug that 'treats' autism, only the symptoms. For example, anti-depressants actually work with chemicals in the brain that, if out of balance, cause a depressive state. The right medication balances this. There is no such chemical component for people with autism, that I know of. Mostly what I see is a cocktail of medications that dope up a person enough that they aren't hanging from the rafters by their feet but not walking around in a stupor. I am not a big fan of using medications in that way, but that seems to be the way of it with many doctors. We replace physical restraint with chemical ones.
posted
Fil, I have recently heard of a place called "Rainbow Omega", which works with disabled adults. It was long enough ago that I don't remember much about it, and it may be too far out of the way for this patient. Or perhaps you've already checked with them and they won't work with him. But I thought I should mention it, just in case.
Rainbow Omega put on a glowing presentation at my local church a few months ago. I haven't heard anything bad about them, but of course you might know something I don't.
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posted
Mabus, I will pass this on to my co-worker. The big deal will be if they can support people with severe mental health issues on top of significant developmental delays. That home looks like a wonderful place but I wonder if they have much in the way of treatment of mental health issues. My co-worker will find out!
posted
I have a question regarding autistic folks. Having had minimal experience with them, are they often gifted in some way or are they, by and large, simply creatures of "high maintenance" (behaviorally irritating)?
posted
Falow, therre is a real spectrum to autism, and those on the "higher" end do tend to be gifted in some ways, but not always.
I've a friend with a fairly high-functioning autistic child, and they have used ABA for several years. It's pretty intensive, 30-40 hours of therapy a week, before he was in school it was all done in the home. It's definitely had an effect on the kid, but I've always wondered if such intensive therapy was necessary or if he would have done well with less, too. It pretty much took over ther lives for a while, but they felt it was worth it.
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posted
fallow, ctm has it right. As a spectrum disorder, some folks with autism you may not realize are autistic (like Ms. Grandin's joke about NASA scientists) and others will be so compromised by their inability to interact with those around them you might think it was some other syndrome. The "Rain Man" type person who can count toothpicks as they fall to the ground or count cards in Vegas aren't the norm, though there are those folks with these types of things. It is mostly an adaptive and communication disorder with all sorts of variety and effects on the person and those around them.
quote:Now here is the thing, though...I still stand by my claim that this is VERY much the exception, not nearly the rule. Israel is seen by many (if the brief bit of Googling was accurate) as anachronistic and very "old school" and abusive. Yet the school also does things that other places refuse to do. The school uses little or no psychotropic medications (which, in the case of autism, is merely chemical restraints), little or no physical restraints and lots of positive reinforcement programming. Still, I have a hard time with electric shock, though.
But not to be misinformed, I did order from their center a video that they send for free that shows before and after treatment movies of students who have been in their program. if it is interesting, I will let folks know.
fil,
You don't really have to see the video (not suggesting you shouldn't, though) to know in advance what it will show, do you? The "before" and "after" will be very much like the ones you see in commercials for exercise equipment and diet plans. They may even say "individual results may vary."
That's not to say that pain and deprivation techniques don't influence behavior. Of course they do. We know that with nondisabled people, those same techniques can eventually elicit things like false confessions.
As to the "positive reinforcement" - remember the "specialized food programs?" Every bite of food and much of what you drink is counted as a single reinforcement. When your individual bites of food are counted as individual rewards, it's easy to claim that the program is based on mostly positive reinforcement.
Also, and maybe this would be best to handle in private email, I'm pretty optimistic I could get some resources at national developmental disability organizations helping to find an alternative placement for this guy if they knew they would actually be depriving Matt Israel and the JRC one more victim. I'm talking mainstream advocacy organizations as opposed to the "fringey" kinda folks I rouse rabble with.
posted
I might be missing something... but... They are counting individual bits of food as a reward... So does that mean if the person doesn't do what they want them to do they don't eat? Sorry if this is a stupid question, but I'm trying to understand just what ABA is about...
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posted
sndrake, I have no doubt what I will be seeing when I get the video, but color me curious. Actually, I met with my co-worker today and she has found out about 5 other places since she and I talked two days ago...which was amazing, because so many had said no for the last few weeks. Thanks for the offer, though, and believe me, I won't forget and look for that e-mail in the future! I work with some of the nicer advocacy groups locally as often as I can and my favoritest person I had the honor to work for (who sadly died in the fall last year) introduced me to the rougher and tougher advocacy groups. Amazing woman. But any ideas when placement gets tough is alwasy appreciated.
posted
Syn, if my foggy behavior supports memory serves, ABA is "Applied Behavior Analysis." What Doc Israel is doing is really just an extreme (or abusive) version of this, I suppose. It is (I think) a generic title for closely looking at a person's behaviors and trying to minimize (reduce or make extinct) the harmful ones while encouraging (developing, rewarding) the positive and healthy ones. Everyone does this as a parent, whether they think they are or not. We do it with kids, pets, employees, and so on. That 30-40 hour a week intensive programming the above poster was talking about may be (we hope) a strictly positive reinforcement plan. Most plans will typically ignore negative behaviors (if they aren't too harmful) just a parent might ignore a child's tantrum.
But where some folks can go a while without positive reinforcement for healthy behavior (say, taking son out for icecream if they don't get in a fight with his sister for a week) some folks can't go 5 minutes without some sort of reinforcement. Thus these intensive programs to help people get control of their own behavior.
It really can sound horrendous, even if all positive and healthy because it sounds so invasive...but having seen how difficult it is to take care of a person with significant behaviors (autism or otherwise), you can't simply step back and say, "meh, that is just who they are."
We work to support people who abuse themselves so badly they need helmets because without them, they literrally bash their brains in. They bite themselves so hard, they leave permanent scars. Or they hurt others around them so often, younger siblings have to be sent to live with relatives. It ain't easy.
This stuff that Israel proposes goes a bit too far, though, especially if the person can't volunteer for it.
Because, we have to face the fact that people do willingly submit to this type of extreme treatment when a behavior becomes too unhealthy. The best example is the people that will actually modify their stomach by closing off a portion of it so it can't hold more food. Why this extreme response? Because they can't control their own eating behaviors. People will self medicate and rish all sorts of medical side-effects to stem off some portion of themselves that they feel out of control about. The difference is that with me, I would be consenting to this while the person with autism typically is not. Or more accurately, cannot.
The logic of those who advocate "torture" for some people with developmental disabilities is a parallel logic to arguments in support of other uses of torture.
Mostly, it relies on the "last resort" framework. I think you're pretty familiar with the rationales laid out for justifying torture in some cases - the only way to get information in a timely way that will save lives and variations on that theme.
Advocates of aversives and, for that matter, the American Psychological Association, think the discussion should revolve around what kinds of aversives are appropriate in a given situation. The issue to them is one of clinical judgment and standards, rather than human rights. And they'll typically use the real or hypothetical case of a person whose situation is so dysmal no one could see any other way out of the situation other than using torture on the person to control behavior.
Calling something a "last resort" is an exercise in self-reinforcing circular logic. Typically, once has settled on that course, the only avenues that get explored from then on are avenues of the aversive kind, since, as you told yourself, you only turned to inflicting pain as a last resort.
Let's go back to "standards," though. In an infamous incident, the staff at BRI (now named the Judge Rotenberg Center) subjected one person to approximately 5000 shocks in a 24 hour period.
I had the opportunity to challenge an advocate of aversives, Tom Linscheid (he's in your state, fil), who was a coinventor of the original shock delivery system called the SIBIS about this.
It was on a listserv that was also being broadcast on usenet as bit.listserv.autism - which means his reply is still available through google.
quote:As to the issue of 5000 shocks in one day and my unwillingness to comment on that and whether "behavioral theory" supports that. Again, behavior analysis as a science is involved with the demonstrations of functional Relationships between behavior and environment. Knowledge of behavioral principles can be "applied " in many forms without changing the theory. Electricity is electricy regardless of how it is used. The relationships between resitence, current flow and voltage are not changed by whether they are applied for good or evil. So again, the question of 5000 shocks in one day is a question of application not of theory.
If the question is, can 5000 shocks a day ever be justified as an application, let us look at a couple of senarios. The first hyothetical situation; the baseline rate of a severe self-injurious behavior is 20,000 per day, when we begin to treat the behavior with contingent electric shock, the rate is 4000 the first hour, then 1000 the second hour and then the behavior does not occur for the remaining 22 hours of that day. I can see where this may be considered acceptable by many, especially if the behavior continues at a very low or zero rate over subsequent days and weeks.
Senario number two. The baseline rate is 5000 per day and once treatment starts there is no change over the course of the entire day and therefore the person receives 5000 shocks. In this situation, continuation of the treatment is not justified because it is not effective.
My point in not commenting on the newspaper article is that I did not know the circumstances of the treatment case, especially as to baseline rates and rate of behavior accross the day. Without this information it would be hard to answer the question of whether the reported number of shocks was justified. If I were the parent of the person described in the first scenario, I would be happy and relieved that my child was no longer engaging in SIB 20,000 times a day, as the parent of the person in the second scenario, I would be dismayed that the treatment didn't work and that my child had to receive 5000 shocks.
The point is, without the knowledge of baseline rates and rates of behavior during the treatment day, it is not possible, from my point of view, to either support or not support the application of 5000 shocks in one day. If you are opposed to contingent electric shock as a treatment then knowledge of its effectivenss is irrelevant and you will be opposed regardless of details. I do certainly agree that when numerous aversive stimuli are administered in one day, the therapists are accountable for justifying the practice but I do not agree that it is automatically a bad practice - it depends on many factors, not just the number.
So, what he's said is that he's absolutely unable to set even the most minimal set of boundaries in regard to when "therapy" slips over into abuse.
Assuming no sleep or bathroom breaks for the individual, this involved an average of about 3.5 shocks per minute! 15-20 seconds to process the shock, figure out what it was in response to, and formulate a response. For someone with significant neurological disabilities.
In case it's not clear, I have very little respect for Tom Linscheid, Matt Israel, or any of the others of their ilk who claim the debate should be about "standards."
posted
Howdy, sndrake...amazing follow up. I did underestate the concern, for sure. That stuff is amazing and I am surprised that Israel and his ilk have so much support in some parts of the treatment community. Thankfully, that just ain't happening around here (well, outside of people actually abusing folks and being arrested for it...that, sadly, happens everywhere...working on such a situation like that right now).
I wanted to give you some interesting follow up (okay, interesting to me, anyway). So, to follow up on my follow up, my co-worker took the concerns I brought from folks on the Hatrack with accompanying documentation. My co-worker presented (in cool tones, not my overheated "Oh my freaking God...that place tortures people!" sort of way I got after reading sndrake's stuff.). Still, the concerns were brought up but the mother wanted to give the place a fair shake and got a "virtual tour" of the place.
Check this out for a sales pitch...
Each room in the facility at Judge Rotenberg is designed by a unique artist and is the coolest of the cool. Each child's room has a TV, satellite receiver and DVD player. And so on, and so on... A list a mile long of "cool stuff" that, thankfully, our clinical director of psychology called "a bill of goods" and nothing more useful.
They are an extremely pushy agency, too. My co-worker expressed interest after they responded to her case application...which they took as a verbal contract and skipped over my co-worker and called our Superintendent to say "Hey, where's the written contract??!!" as if it were a done deal. They cost more than just about any treatment agency in the country...kind of the country club of treatment facilities...
Also, when asked by the staff at this agency "what does _________ (insert name here) like to do?" my co-worker told her "talk about sports and politics." The staff was very excited and said "we can make that a part of his reward system!" as if to say, you get meaningful conversation only as a reward, not as expected treatment. It just isn't about shocks and withholding food...it is about withholding all meaningful things! Yipe!
And get this, even with the warnings, the mother of the young lad in need of placement LOVED the place! Yikes! Now I have an idea how they can continue to run programs that are still considered abusive. They are filthy rich. Sheesh. Luckily, our Supe is pretty shrewd and when asked if we would pay the nearly $500/day (you read that right) fee...he kindly said, "I am sorry, our connection is breaking up" as he crinkled a piece of paper by the receiver.
Okay, he didn't do that...but he did say "that is ridiculous." So no money from our agency to support theirs, at any rate (unless mom wants to pay it alone...and even as a good lawyer, she ain't $500/day good).
So, to those that opened my eyes to this agency (albeit, not knowing that it was actually serving a bigger deal than just good discussion on the internet) my thanks and my co-worker's thanks.
Truly the coolest...
But now, another discussion would be "how far" would or should a caregiver go to ensure the health and safety of a child or adult with autism? When is treatment torture? I know 5000 shocks a day or a restricted diet fit the torture bill, but what is a "last resort" when working with someone who is abusing themselves or others to the point of serious damage?
posted
$500 bucks a day? Does she know that they shock people there? Did they mention that? And just what do they mean by award system? I don't understand this place fully.. perhaps it's so bad my brain is having trouble grasping all the details
So I'm not an expert. I don't enough about psychology, in fact I have some doubts about it... Nevertheless, I cannot understand the logic in using PAIN on a person who's self abusing. There has to be another, gentler way to handle it. You're talking about a young person banging their head against a wall, especially during unfamiliar and stressful times. What if some effort was taken to lessen stress? Difficult, but not impossible. What if a lot of autistic people behave violently due to something that can easily be fixed? Wouldn't it be better to try to figure out how to teach the child to communicate their needs rather than shock them? Prehaps I am ignorant... I am trying to cure that, but it still bothers me.
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Thanks for the responses. I'm curious about clinical diagnoses (shrinking) vs. romanticizing. Like I said, I've never had any direct personal experiences, but a friend of mine was a nanny for two boys, the older was autistic. From her comments it sounded like the younger boy was exceptionally bright while the older brother was pretty much just an infantile pain in the arse night and day ("pampered", "spoiled-rotten", etc, if it weren't for the clinical assessment). Another friend of mine looked after an autistic boy for a while and showed me the collection of tin foil animals he'd made for her. Looked like genius to my naive eyes.
quote:But now, another discussion would be "how far" would or should a caregiver go to ensure the health and safety of a child or adult with autism? When is treatment torture? I know 5000 shocks a day or a restricted diet fit the torture bill, but what is a "last resort" when working with someone who is abusing themselves or others to the point of serious damage?
I don't have the time or amount of sleep I need to reply adequately today. Went to an outdoor concert in our town - Koko Taylor is a performer many people told me I shouldn't miss, especially when its for free. (They were right, btw) Pretty sleep-deprived today and I gotta take off for a meeting this afternoon.
But...
The problems regarding "how far" and "what is allowable" isn't one limited to people with disabilities. For example, while some people don't accept the necessity of any form of physical punishment of children, there's a range that's accepted as lawful in our society. There's a neverending battle to figure out when and where a parent's rights end, and a child's rights to protection from harm begin.
The first thing, of course, is to try to establish some bright and clear lines about what is unacceptable. Child abuse laws fill that need, at least to a mimimum level.
Except for two states, we have not done the same for people with developmental disabilities.
I startle people on a regular basis when I assert that people with developmental disabilities are the only class of U.S. citizens that can legally be subjected to torture. That's not to say that torture doesn't happen in prisons and other places - but the only people with whom its use is sanctioned are those with developmental disabilities.
quote:Except for two states, we have not done the same for people with developmental disabilities.
When you wake up more, which two? (please say Ohio, please say Ohio, please say Ohio).
Center for Medicare and Medicaid Services, who oversees all of our programs (the ones paid by Medicaid, of course...which is most of them) has swept through our state and has laid down the law on setting up the sorts of guidelines, though. We had people on behavior plans in this state that had unclear parameters on how certain aversive behavior plans would work.
Aversive in this case can be holding someone to keep them from hurting themselves or others. When is that safety and when is that abuse? When is NOT doing that safety and when is NOT doing that neglect? That is a tough line to draw, especially when supporting people with significant behavior and/or mental health issues. Time outs are also aversives, I believe. I would shudder to think of any in this state that were as bad as the Mass. center we have talked about.
posted
fallow, I think you aren't seeing anything with naive eyes at all...you are just seeing two different people, that's all. People diagnosed with autism spectrum disorder are just as varied in talents and troubles as anyone without the diagnosis.
Spoiled kids with disabilities are just as common as those without disabilities. I think spoiled kids come from parents who are unable or are unwilling to give the children the needed boundaries in their lives. Same with kids with autism. The consequences can be just as damaging, too. It sounds like the "pain in the arse" kid fits this bill. I am not sure if it is as common now, but my parent's generation had a lot of guilt if they had a child born with a disability. Why? Most medical professionals prior to the 70's (and let's be honest, some are still around) would blame the mother for the child's disability.
"You must have done something wrong."
Or, in the case of autism, "You were too cold to your child." See Dr. Bettelheim's works from the 60's, as he advocated that it was parents that caused autism.
Because of this guilt, I have spoken to many of this older generation of parent that would "over compensate" with food, toys, "freedom" and so on...to the point where the child had no boundaries or expectations and were worse off for it.
Same with today. I think any child, disability or not, raised without reasonable boundaries and expecations are going to have a difficult time as they grow up.
quote:When you wake up more, which two? (please say Ohio, please say Ohio, please say Ohio).
Sorry, fil.
As I noted in a previous post, the states are Philadelphia and Nevada.
BTW, the attitude about using interests as "reinforcers" isn't unique to the JRC folks. Skinner-type behaviorists (and they are still overrepresented in the developmental disabilities field) seem to have no problem with doling out what may be a person's main connection to the world and people around him or her as "rewards."
Me, I look at it as an opportunity. If I'm able to engage in a conversation about Star Trek or James Bond movies with someone, it's possible that we might actually end up talking about stuff outside of their circumbscribed area of interest, if the relationship develops well enough over time.
Too often there's a subtext of control that dominates discussion of "behavior problems" - or at least that's what I've seen in my experience.
Here's an example:
We had a problem in a group home I worked at. The staff started collecting laundry at night from people's rooms. Then they'd wash it and dry it and put it back folded on the dresser.
One of the residents was a guy who didn't speak at all. He got very upset at this. He'd gather up the clothes in the morning and carry them to the laundry room. When the staff person carried them back to the room, he'd get increasingly agitated. This "back and forth" would continue until he got agitated, yelling, stomping, hitting himself and striking out at the staff person.
The morning staff people wanted a strict restraint policy put into effect to control him and eliminate this behavior before it escalated. (I should add at this point that I was just another low-level staff person)
I had some different thoughts on the matter, and was able to get people to try something different. Not without resistance, though.
I tried to view the resident as someone trying to make sense of his world. We knew he'd spent most of his life in an institution and there's no telling what he learned was "normal" there.
But the basics seemed to be this: He put his dirty clothes in a pile on the floor at night. In the morning, those same clothes were folded on top of his dresser.
Maybe the simplest explanation was he thought they were still dirty?
I asked the morning staff person if they could hold his clothes back. In the morning, they could stick the clothes in the dryer and run it for a bit. Have the guy come to the room, get them out and then put them away.
Her first reaction was "I'm not going to do all that laundry again!" I pointed out I was talking about just heating them up a little in the dryer. Her second reaction was "We're just giving him what he wants!" I pointed out we'd be giving him what he UNDERSTOOD.
When I further pointed out that the time involved in my proposal would involve zero stress and a lot less time than a new behavior plan calling for restraint, people went for it.
It worked - obviously, or I probably wouldn't be telling this particular story.
I was prepared to be wrong. I was trying to make informed guesses about what was motivating this particular person's behavior instead of just trying to force him to conform to what I wanted. If it hadn't worked, there were other hypotheses that could have been explored.
But how you approach a problem can make a very big difference in terms of the solutions you come up with.
Posts: 4344 | Registered: Mar 2003
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I should add that this particular guy was someone who was extremely social and good-natured. It was amazing and alarming to see how fast people could turn view him as someone who "needed to be brought in line" (paraphrasing).
This was a pretty simple situation - not all of them are. But the success started with the question of "what can he be thinking?"
That question was considered irrelevant by Skinner, is currently considered irrelevant by people at JRC, and in too many places alleging to "serve" people with developmental disabilities.
"Support" DOES NOT EQUAL "Control"
Posts: 4344 | Registered: Mar 2003
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Totally agreed. Though it doesn't take Skinnerian training (can I say "Skinnerian?") to get to this point. Paid support staff with high school degrees so easily fall into the "control" model of providing care. It is a hard thing to overcome. The best way is to make sure that a person with significant disabilities (who may not be able to speak up for herself) has SOMEONE (or more than that) who is outside the paid loop...not me as a County worker, not the paid direct care staff, not the paid psychologist, etc. Someone who is there only for the individual. Not even necessarily a guardian or "advocate," though those often fill that role (But too often, guardians are paid any more...that "paid" thing can taint relationships).
What makes the balancing of this harder in Ohio, any way, is the LAW that says we have to ensure people's health and safety. Seems so obvious...just keep them safe. But this also means keep them safe from themselves, too. And this is where the rub gets more difficult. The state hasn't done a good job of balancing "dignity of risk" and "personal choice" with "health and safety." This has caused more than one overzealous behavior plan. People can lose their licenses and/or jobs if they fail to absolutely protect a person from everything (which ain't easy) yet could lose the same thing if they go too far. Oy.
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Also, the best change we have had is with portability of support funds. A person or guardian has money tied to the individual receiving services, not to the location the services are given (as it was so very recently). It used to be that if you didn't like a group home you were in, too bad. You can put in for a new one but good luck with the long wait list (and you weren't a priority...people without housing and support were). Now the money is tied to the person and if you don't like a service, see ya! This has been the greatest part of my job...helping people choose providers and helping the person hold these agencies responsible. Very cool...which is why having a good non-paid person in there is so important. As a county worker, I won't see nearly as much nor at the same level of detail as someone close to a person who sees it through their eyes.
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I work with some of the nicer advocacy groups locally as often as I can and my favoritest person I had the honor to work for (who sadly died in the fall last year) introduced me to the rougher and tougher advocacy groups. Amazing woman. But any ideas when placement gets tough is alwasy appreciated. ![[Hail]](graemlins/hail.gif)
